AE Alliance Blog

The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.

Incidence of AE estimated by Mayo study

Autoimmune encephalitis experts at the Mayo Clinic published the first population-based study of AE in an effort to determine the incidence of the disease. The researchers found that in the last decade approximately 1 in every 100,000 people develop AE each year. This translates into approximately 5,000 new AE cases in the US annually and …

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AEA represented at UK-based Encephalitis Society Conference

Researchers and clinical professionals interested in the study of encephalitis descended on London on Monday, December 4, for the UK-based Encephalitis Society annual conference . More than 120 people from the UK, USA, Denmark the Netherlands and Indonesia joined for a day of presentations and networking on topics surrounding encephalitis. The conference ended with the …

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Live Webinar on Autoimmune Neurology

You are Invited Live Webinar on Autoimmune Neurology January 18, 2018 2:00 pm MST The Rocky Mountain MS Center is hosting a public webinar presented by Dr. Amanda Piquet on The Emerging and Evolving Field of Neuroimmunology. This webinar is free and open to all. Dr. Piquet will cover autoimmune encephalitis, autoimmune epilepsy and Stiff-person …

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AEA executive director speaks at University of Texas Medical Branch

Autoimmune encephalitis was featured at a November 21, meeting of the Osler Club sponsored by the John P. McGovern Academy of Oslerian Medicine at the University of Texas Medical Branch’s  (UTMB). Following a sit-down dinner, the 48 attendees, many of whom were physicians and physicians in training, filled the room to capacity for the program …

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My New Normal: Reflections & Advice on Life After Autoimmune Encephalitis 20+yrs later

“She probably has a month left before she is in a persistent vegetative state or dies.” These are not words that you or your loved ones want to hear any time, but especially when you are only 25. Friends came to say goodbyes and the outlook was bleak. Just six months prior (during the Summer …

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Happy 5th birthday to Autoimmune Encephalitis Alliance

The AE Alliance turned five years old yesterday!  Five years ago on Dec. 17, two families that had kids with AE came together in hopes that they could start something to help others suffering from this little-understood disease.  The vision was to not only disseminate information to help patients but also to give support to …

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Diagnosis of AE on clinical basis confirmed by pediatric study

Experts in the field of AE came together in 2016 to establish a set of clinical diagnostic criteria to be used early in the course of disease (Graus et al). This was developed so that patients might be diagnosed with suspected AE and treated promptly, while still awaiting test results or in areas where antibody …

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